Fingo switching leading to rebound

Faissner S, Hoepner R, Lukas C, Chan A, Gold R, Ellrichmann G. Tumefactive multiple sclerosis lesions in two patients after cessation of fingolimod treatment. Ther Adv Neurol Disord. 2015 ;8(5):233-8.

BACKGROUND: Fingolimod (FTY) is the first oral medication approved for multiple sclerosis therapy. Until now, little has been known about the effects of FTY withdrawal regarding disease activity and development of tumefactive demyelinating lesions (TDLs), as already described in patients who discontinue natalizumab.
METHODS: In this study we present the clinical and radiological findings of two patients who had a severe rebound after FTY withdrawal and compare these with patients identified by a PubMed data bank analysis using the search term ‘fingolimod rebound’. In total, 10 patients, of whom three developed TDLs, are presented.
RESULTS: Patients suffering from TDLs were free of clinical and radiological signs of disease activity under FTY therapy (100% versus 57%, compared with patients without TDLs) and had rebounds after a mean of 14.6 weeks (standard deviation 11.5) [patients without TDLs 11.7 (standard deviation 3.4)].
CONCLUSION: We propose that a good therapeutic response to FTY might be predisposing for a severe rebound after withdrawal. Consequently, therapy switches should be planned carefully with a short therapy free interval.

When you use natalizumab and it keeps cells stuck in the blood and then you stop taking the drug, white blood cells go to brain and cause problems and this is a rebound. So if you do effectively the same thing with fingolimod which traps cell in lymph glands and you stop taking the drug, then cells go in blood and then into brain and you will get MS back and this could be coming back with a vengence. This is what happened here and the ones showing the greatest rebound where the people showing NEDA on the drug. So why switch?

Waiting for too long before you switch can be disasterous, so plan your switches with your neuro

CoI: None relevant

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  • "…the ones showing the greatest rebound where (sic) the people showing NEDA on the drug."

    So that means that NEDA is complete hokum as the MS disease is never gone and ultimately seeks opportunities to reemerge and undertake greater damage than before.

    NEDA is smoke and mirrors. We need better therapies… more efficacious and honest medicines, please.

    • NEDA means no disease activity is does not mean a cure. It is not hokum at all

      Your immune systme is there to give you life-long protection from infection and so if you immune system is recognising your brain as an infection this response is their life long.

      Other than the immune ebooters none of the drugs aim to cure you, they only aim to manage your condition. Take the drug away and disease comes back…because they have not switched off the rouge immune system.

      This is possible if you know what to switch off but not with the non-rebooting current crop of drugs. It is in pharmas interest to manage not to cure.

    • "It is in pharmas interest to manage not to cure."

      Gosh. Says it all, really.

      It's like Dr Dre is right when he says the money is in the medicine, not in the cure.

    • To be more accurate, NEDA means no observable disease activity. Not all disease activity is readily observable and progression means the activity has already occurred….

    • Pharma will cure but it'll cost you. Case in point the Hep C drug sovaldi. The price of a human liver is 84k in USD. What is the cost of a repaired CNS? My bet is more than 84k.

    • "To be more accurate, NEDA means no observable disease activity"

      Then it would be NODA….I think ProfG was one of the first to use NEDA in terms of MS but no observable evidence I will accept. The no disease is only as good as how hard you look.

    • lol no, not NODA…. if NEDA = no "evidence" of disease activity and we can only measure some evidence, not all, then it can be summarised as no observable disease activity. From memory, Prof G has also talked about NEDA 2 and NEDA 3 – adding to our ability to observe the damage occuring. I'm all for NEDA, don't get me wrong, but there are limits to what we can observe in MS at any given point in time

    • lol i think we say poratRto too lol. i only mention this because of my experience talking to countless ms patients who express feelings that their neuros aren't listening to them because they look at mris and they do the edss tests and tell them they aren't progressing, when in their own opinion they are feeling worse and worse. i agree it's language semantics whether you call it neda or noda lol…. but i think it's a psychological difference in interpretation. prof g did a video for shit ms where he talked about lesions and things that can't be observed on mris (which is why i picked out this semantic lol). i think most neuros aren't evil people who set out to hurt their patients (duh lol 😉 and most patients can be quite understanding that their docs are human too – but there seems to be a huge gap between the neuros' ability to understand their patients' feelings and the patients' ability to convince their neuros they are not hypochondriacs but that they are going downhill even though the mris consistently show nothing new and the progression isn't captured by the edss exam. i know you're not a clinician and i'm forever grateful for the engagement on this website. my perspective is loving an ms patient who has had to go through hell to find (and train lol) the neuro she now gets along with fine and who treats her well. my job now is to understand why there is such a disconnect between 2 sides of well meaning people because there is so much misery and frustration out there in the ms world 🙂

    • Bojana – your accidental typo in your comment of 8:51am totally cracked me up and made my day, and I absolutely know you don't meant what has come out on the page: "…made a video for shit MS….." – but most appropriate – having MS is SHIT!
      I'm sure Shift MS won't get upset – 'cos they would also know that having MS is shit.

      And I know what you mean about "not listening" – they also stuff it up in their reports as well. Despite describing in the report to my GP some of my symptoms which were a bit worse last time I saw my neuro, he states that he could find no neurological deficit that day, and then goes on to comment on some slow responses and brisk reflexes (this is despite the fact that my walking distance has reduced significantly in the past 12 months and is now down to around 250m max). Go figure……………….

    • LOL thanks anonymous… would you believe this is the second time in my life i've made the same typo… when i was paying my way through uni i worked at a call centre and sent an email to "Dear Shit Leaders". They too were shift leaders.

    • Never mind, Bojana – the accidental ones are usually the best! And while we are talking about accidental toilet humour typos – the best one I ever did was a some sort of very important submission to do with irrigation systems and I had to type up a comparison table on metal versus plastic options. So – what did I type up – "plastic fartings" (sounds very uncomfortable….)
      Fortunately the error was picked up just before the offending document was sealed and posted – the worst thing was that it was back in the days before word processing so it meant a whole page had to be retyped – ten minutes before the post office closed!

  • Slightly confused MD…

    What do you mean by saying that waiting too long ca be desastrous?

    What switch is there to plan if youare NEDA?

  • there is pregnancy and then there are side effects. i read the other day prof g comment that flushes are not a reason to switch from gilenya. of course, i would like to see him say that to my partner, who went through 5 years of hot flushes while on treatment for breast cancer. why should a breast cancer survivor be embarrassed by hot flushes as a result of her treatment? – she shouldn't. but i dare anyone to say that to my partner – my head has been bitten many a times. i'm fairly sure that any MS treatment that caused her to have hot flushes would get the boot because she feels it is an unfair and unwelcome imposition on her life. anyone want to argue with a breast cancer and ms survivor about this? 🙂 ps. my partner is not on gilenya so this is all hypothetical.

    • ah me bad lol. it was the comment re flushes that made me smirk regardless of the drug… i spent 5 years of cancer treatment which involved putting my partner in induced menopause trying to convince her hot flushes are the least of her worries… can't say i've succeeded but i have definitively learnt to shut up 😉

  • "the ones showing the greatest rebound where (sic) the people showing NEDA on the drug. So why switch?" A person might switch if their lymphs dropped too low. In that sort of circumstance, is Tec a poor switch?

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